Woman raises awareness of rare ailment

New Port Richey resident Stepheny smith suffers from a rare kidney condition called loin pain-hematuria syndrome, which causes painful kidney flare-ups and blood in the urine. Aug. 1 was LPHS Awareness Day and she hopes to get the word out to the community and beyond about the conditon. DAYLINA MILLLER/STAFF

On Aug. 1, Stepheny Smith's Twitter feed was filled with encouraging messages from others like her, those living with a rare kidney condition that causes painful flare-ups.

To help raise awareness of the condition, Smith targeted medical accounts, specifically those associated with urology and nephrology, and messaged them this post: "Can u plz tweet about loin pain hematuria syndrome? Today is LPHS Awareness Day. Thx!"

Seven years ago, the New Port Richey resident was diagnosed with loin pain hematuria syndrome after nearly two years of searching for an answer to her extreme kidney pain and blood in the urine.

When she moved to New Port Richey two years ago, she had yet to meet a Florida doctor who had heard of her condition. She was diagnosed by a specialist in Ohio.

LPHS causes painful kidney flare-ups that can leave Smith immobilized for as little as a few minutes to as long as several weeks. Worldwide, the number of sufferers, primarily women, is counted in the hundreds.

Smith tries to raise awareness of the condition all year long but focuses most aggressively on Aug. 1, called "LPHS Awareness Day" by her LPHS support group, which has members, of only a few thousand that have been diagnosed worldwide.

Pain medicines make Smith nauseous, so thanks to suggestions from a book called "The Pain Cure," she quit her medications, drinks a lot of water, takes vitamins, and doesn't drive. She avoids personal triggers, like sweet tea, which can aggravate the pain. She also does daily yoga and exercises, which can help prevent pain, too.

Smith doesn't recommend that everyone with LPHS quit taking their medications but for her, a more natural remedy is what works.

In the last year, a new device has emerged, the spinal cord stimulator, which has helped some LPHS patients get rid of flares completely. It's something Smith fears she'll have to try in the future.

"I'm scared to death from something like that," Smith said. "I'm scared of these electric paddles being put in me that is going to be sending waves to interrupt my nerves so for me, for now, I feel the way I go is what's right for me."

The 39-year-old has raised three children and is known in the community for her bright blue-colored hair and rides on her "adult trike" around town. It's hard for her to hold down a regular job because her flare-ups can cause her to miss weeks or months at a time.

So to make an income and help raise awareness of the condition - Smith says many doctors don't even know about it - she makes and sells LPHS Awareness bracelets for $10, just enough to cover the cost of jewelry supplies.

Each bracelet spells out "LPHS" on lettered beads, the color chosen by the buyer. The jewelry comes with cards with a link to an LPHS blog that explains the condition.

"If you're wearing a bracelet and somebody asks you what LPHS is, you can give them the card," Smith said.

If you're interested in purchasing a LPHS bracelet, send a message through the Jewels of Eden Facebook page at https://www.facebook.com/jewels.of.eden and Smith will send you a PayPal invoice.